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Old 01-17-2008, 04:50 AM   #1
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Join Date: Jan 2008
Location: philadelphia, pa
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ddanny52 HB User
lyme disease

Hi, My name is Danielle and I fell ill Sept. of 07. My neck and upper back began to hurt - severly. I had an MRI which did reveal a c5/c6 bulge - which i probably have been having due to chronic back pain in the area for six plus years. One week later I developed fatigue, dizziness and severe head pressure. Which have progressed over the past four months as - left ear pain, with right ear pain at times, left temporal pain, hot/cold sensations in different parts of my head, ear fullness, sinus pressure that comes and goes, sensations in my head that feel like waves, pressure changes in my head, intermittent blurry vision, gum pain, left sided face pain - feels like it want to go into a bell's palsy but has not, also,two episodes of slurred speech and my legs feeling heavy like i could not walk. joints hurt at times - but not severly to where it is an issue. also, shortly after i got sick i develped two weeks of severe migraines and have not had that is three months.

I deal with dizziness everyday and headaches. In Oct. 07 I went to ER for headaches and dizziness and other symptoms and finally on my fourth ER visit in which an ambulance had to bring me - i was admitted.

I had spinal tap - negative, MRI/MRA of brain - negative, I am negative for Rhematoid arth, neg for MS, neg for lupus and negative for many things. My blood work is normal - except one of my antibodies was elevated indicating possible lyme. This is when it all started. My symptoms became worse - with extreme fatigue and I could not eat or get out of bed.

I have seen eye docs - everything neg, ENT - for inner ear testing and middle ear testing and balance test - negative. I have see neuro doc - got nerve blocks in my head - didn't last so it is not occipital nueralgia, have been to PT for disc problem - didn't help. I have had two rounds of nerve blocks in my necks which help with headaches and dizziness a little for the first few days, then all my symptoms come back.

The doctors say it is not the disc in my neck. I have seen a cardiologist, ortho, nuerosurgeon, infectious disease doctor, ENT, nuero, eye doctor, and I am following a rhuematologist who specializes in Lyme.

I have two negavitive western's blots, negative elisa - so my positive antibody was probably a false positive. I was still treated with two months of doxy - and have felt better. my symptoms listed above are all still there - and my energy has increased.

however, everyone tells me nothing is wrong as most docs do in this case. I have had an extensive work up and remain with lyme like symtoms. my lyme doc thinks is could be but isn't sure. i am not on antibiotics and she thinks i have post lyme fibromyalgia.

any comments or recommendation - i would love. i feel like i just have to live with this and feel there is no one else to help. should i fight to get on more antibiotics or fight for IV therapy even thought my wester blot is negative.

i am from PA and have talked to a lot of people with same symptoms with negative blood test. some test positive years later.

instead of feeling sorry for myself, i fight it every day and live the best i can. some days are hard though. i have a six year old and two year old. it is hard for me to concentrate an be a good mom when i have dizziness and headaches. ativan helps with this.

i take one every morning and go to the gym no matter how bad i feel to try and stay focused. i have gained weight with this too. my body is doing all kind of weird things and the docs say nothing is wrong.

what to do?

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Old 01-17-2008, 09:55 AM   #2
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Join Date: Nov 2007
Location: indiana, usa
Posts: 10
kfunk HB User
Re: lyme disease

I feel bad for you... Im having the same problem with my doctors. I had a brainstem stroke in May which is unusual for someone my age (43) because I WAS healthy worked out 3 times a week definitely not over weight and I dont smoke. Starting in October started having headaches and extreme fatigue and a very elevated blood sed rate. Like you spoke about. I asked my neurologist about Lyme disease and he just shrugged me off. Please let me know what you find out. These tired swings seem to last a couple of weeks and then I feel mediocre for a few weeks and then they come back.

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